Parenting a child with a disability can be a challenge, and often those challenges feel like a strong tidal wave coming at us, threatening to make us lose our balance, to fall, to give up. But we don’t. We never do.
The love for our children compels us to stand strong against the tide crashing against us: the stares, the school system, the medical billing, the ignorance from other people, or the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. So we reach out and hold each other’s hand. Because we know together we are stronger, and because we need someone to stand with us, we cannot do this alone.
We face challenges. There are hard things about parenting children with disabilities.
- We don’t want to be isolated, yet sometimes because of our children’s needs we find ourselves alone. We want friends. We need friends.
We feel like we are not doing enough:
- Deep down we often wonder, could I do more? Could I try harder? Am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, failing at our marriage, failing at keeping a neat home, failing at our jobs.
Siblings:
- At times, we feel like we are cheating our typical children from having a normal childhood experiences. We feel torn, and we fear that our typical children will feel less important or forgotten.
Comparing our child to typical peers:
- We try not to compare, but sometimes it’s hard not to notice how different our children are to their typical peers.
Lack of communication:
- It is hard when you cannot understand your child because of a speech delay, it can be frustrating when you cannot have a conversation with your own child. The lack of communication also affects other social interactions and the forming of friendships. It is especially hard when your child is non-verbal.
Others:
- It is tiresome when other people throw judgment at us.
- It is insulting when people hint they could do better and that our children’s behaviors are a result of poor parenting.
- The constant battle with schools, doctors, insurance companies, etc, is exhausting.
- Some people don’t even give our kids a chance.
- We worry about the unknown, what the future holds. What will happen to our kids when we are not around? And how do we let go?
Dealing with the diagnosis:
- When we fist received our child’s diagnosis, we had to grieve the loss of the child we thought we would have. Once we deal with the diagnosis, we still have to deal with the everyday realities of our children’s’ needs.
We want you to recognize the hard things about parenting a child with special needs, we hope that someday you will understand what it is like to walk in our shoes. Ultimately, we want you to stand with us, because when you do, you will see that we are courageous, funny, compassionate, resilient, brave, flexible, forgiving, generous, and so full of love. And we want to share that with you too.
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Are you a parent of a child with special needs? What is the hardest thing you deal with as you parent your child? Leave me a comment here, or join the conversation on Facebook where I asked, “The hardest thing about parenting a child with special needs is_____________”
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I think the hardest thing is the communication piece for us. It is difficult for my son because he can’t express himself or engage socially as other children do. There are behavior difficulties as a result. Relationships with siblings and friends can be strained. That is probably the biggest constant difficulty.
i agree.thats the hardest part for me too.she gets so frustrated when i cant understand her and acts out in school as a result.She knows what she wants to say it just wont come out.
I think the hardest part for me is my son’s eating issues which make it a very tough struggle with school as he won’t eat there and then in the afternoon has a little more trouble than normal focusing because his levels are out of balance. The other big part is his lack of understanding social ques. It is so very difficult to see your child being treated badly by other children and in their desperate need to just “belong” they blow off the meaness from other children and still want to be friends. My son doesn’t have a mean bone in his body, he loves BIG and cares deeply. He just doesn’t see the world as everyone else and I think that is ok.
Oh Jackie, I so relate. The feeding issues are so hard. My 5 year old daughter doesn’t eat any solid foods, strictly pediasure. I don’t know what we’re going to do in the fall when she starts kindergarten. It’s so hard for her too, because she wants to eat all the things she sees other kids eating, but her sensory issues and oral aversion are just too much for her to overcome still.
Maddy,
Go now and talk to the special ed director of the school. Find out NOW what you need to have in place so you don’t get any EXTRA stress or surprizes when school starts.
The more informed you are, the better and smoother things will go.
Take care
My daughters eating issues got so much better when she started school! Seeing peers eating and a variety of foods helped her tremendously. She is 8 now and I honestly cannot believe how far she’s come. I hope you experience even a small degree of this! It can get better!
I do not have a child with special needs, however, reading your comment almost brought me to tears. Feeling defenseless when wanting to protect your children is something all parents deal with. I can only imagine how much that is heightened when your child has the possibility of being exposed to situations like that at a higher rate everyday. I pray that you and your family find all of the support that you want and need
You hit the nail on the head! I feel as you described. The communication part is that I understand Koa, but few others do. With my stress I end up feeling like I can’t communicate or express myself even to my family. That makes me feel very alone. Thank you for sharing!
Kim, communication/speech is so hard. Thanks for leaving a comment!
Has anyone suggested sign language for your children. I cared for a sweet boy with trach. He. got along so much better with signing, only frustrated when this nurse couldn’t understand him. Some places. offer it to whole family’s together, you get to know the individual. nuances. My heart hurts for all you parents have to go through.
We do use sign language 🙂
I am not a parent of a child with special needs, but I am a sibling to one. I enjoy reading posts like this because they put me in my parent’s perspective. I know having a younger brother with special needs is hard, so I can’t even imagine what this is like for my parents. They have to care for him along with all of us other kids. Of course, we all try to help out, but the fact is, most of the work falls to mom and dad. A reminder that my parents aren’t as invincible as I think is always good. Reading things like this remind me just how much I really do need to help out and be there, not only for my brother, but for my parents too.
I think the hardest thing about being a sibling to a child with special needs is patience. Patience is something you can never have enough of if you are in this situation. I think this is true for both siblings and parents.
All this being said, I love my brother to pieces. My family wouldn’t be my family without him, and I wouldn’t trade him for the world. He brings us all closer together, whether that be because we need to buckle down and help him tackle some task, or because of his amazing sense of humor. John is the glue to this family, a true blessing and joy to have.
Lauren, as a mom, I really appreciate a sibling’s perspective. My typical daughter is only seven, so she doesn’t really feel like her sisters are any different. however, the older they get, the more she might have feelings to share with us. What is your brother’s diagnosis?
Your comments were so touching I was choking back tears. I so can relate to the article on every level & relate to your reply- our Justin is also the glue & he also can be a handful & a comic too- sounds like your brother & Justin would be great friends 🙂
He has ADHD, ODD, PDD, and dyslexia. He can be a handful at times. Also, we are six years apart, so I always realized he wasn’t typical. But as we got older, his challenges became more prevalent, so I am sure your daughter will have feelings to share. What helped me learned about my brother, voice my feelings and how to help him was my parents taking me along to his doctors appointments and therapy. Some of the therapists would even ask me what I thought and how I felt and how I was handling everything. It really helped me cope and not feel left out of the family and of everything my brother was going through.
I hope my daughter feels she can always express those feelings too. She has been to therapy with me and her sisters since she was two years old, so for her it is normal part of life…for now. Thank you so much for your perspective Lauren!
As a mother of two special needs children my son Lucas who is 10 who is high functioning autistic adhd ci and bipolar he gets fixed on a certain item every day its different. He has a huge heart and wants every one to be his best friend. We have a lot of problems with him telling everyone his name address hiving and trying to kiss strangers. Is another big issue, plus behavior problems. But all that aside I wouldn’t change him for the world he is my buggy lovey. Boy wants to make friends and thinks kids that are mean are still his friends. My son Austin 9 Is bipolar possiable schizophrenic, EI, o.d.d, p.o.d. we have lots of angry issues running away, swearing out bursts, sees things, hears things. Not very social only to younger peers. Both of my boys are special in their own ways and like I said before I wouldn’t change them for the world. But I am like everyone else and always try new things to help my children at least once and if that don’t work try something new. Never give up trying. They have a home based therepist and its been better here and there some days are better than others. Sometimes just talking about things help specially if you feel no one understands cause they don’t have the same problems. For a long time I thought I was the only one so I thank everyone for writing about there personal lives cause it means so much specially when you feel alone in all of this.
Its supposed to say hugging and trying to kiss strangers andand he is my buggy loveing boy sorry for misspelled
Kristy,
Hugs to you. We have 5 kiddos so far (I am always open for more). Our oldest 2 were considered typical, but they had their issues too. Our youngest 3 have a variety of specialness. D is 19, she was dx hydrocephalic in utero. Several brain & ortho surgeries in her early years. She is a walking, talking, very opinionated, young lady. Z is almost 15 (next month), ADHD, ODD, PTSD, APD ???, J is 13 with ODD, anxiety, ASD, PTSD, RAD (the youngest 2 joined our family at 9 years old). The Lord has done a great work in all of us. We homeschool the girls, (the boys graduated several years ago) so I am with them all of the time. The most difficult issues have been related to the RAD in the youngest. It is so difficult that not even the therapists seem to really understand how sporadic & extreme her behaviors can be. She is usually my cling on kid, but when she has an episode that all changes. The mental/behavioral issues are our hardest challenges that people just don’t seem to grasp. We are very blessed to have great parent support from other parents of SN kids in Special Olympics. God has blessed us abundantly.
My heart goes out to you, my son also has multiple DX, ADHD,OCD,ODD, and RAD. Yes RAD was difficult, his Dad and paternal family refused to admit and deal with his issues.We adopted C at 20no. Oh, also Failure to Thrive. I did the blanket wrap and that Did appear to help. He is now 20, his Dad and I have been divorced 4yrs. He chose to stay with Dad, quit school at 16, plays video games all night long and sleeps all day. I haven’t heard from him in over a year. Dad completely dominates him. I know he loves me.
Kristy, I actually wrote in my daughter’s IEP that there are no hugs or kisses, so I understand where you are coming from. And like you, I think our children are a blessing. One of the blessings that have come to me because of my girls, are the amazing parents I have met in the special needs community. Amazing, amazing people!
Hi Ellen,
I’m a parent to a special needs daughter. She’s 5 years old and I can relate to every issue that you talked about in your blog post. My constant worry is about her future. Will she be able to take care of herself on her own? Will she ever learn how to drive,or be able to function at a regular job. I think about these things constantly, and I try not to get depressed about it but it can be very difficult at times.
Nicole, my youngest is five as well, isn’t it interesting that we already wrestle with thoughts of the future? But I get it. I actually wrote a blog post about it, not sure if you saw that, it is also a confessions, “the growing up scares me.” Although you know, my husband and I now joke that we want her to live with us forever, yes, we actually want to keep her around 🙂 What a journey we are in!
My daughter is 17. She has been in residential placement for almost a year and a half now. I hate that she is there, but I burned out. They keep talking about transitioning to adulthood…I don’t see it happening. I have to keep on praying and reminding myself that God is in control of her life, too. Sometimes it’s so depressing, and I grow so weary. In less than a year she will age out of residential…we don’t have a real diagnosis from a neuropsychologist, which is supposed to happen soon, but she’s been labeled through the years with ADD, ODD, PPD-nos, emotionally disturbed, LD, and has sensory issues. She also has epilepsy, which started a couple of years ago. She’s very intelligent, but can’t seem to get it out where anyone can see it! She’s the 7th of 8 children, my husband is retired, and we wonder what will happen to her? Her behavior has worsened in residential, as she tends to copy what other kids do. The hardest thing is when she cries because she has no friends. She wants to be like the others, and makes “friends” with the kids she lives with, most of whom are worse off than she is. The social ineptness is the worst because she is so unable to read people and often interprets their behavior incorrectly, and jumps to wrong conclusions. I have written about her quite a bit on my blog, although not recently. I think I just got tired of talking about it…. the ancient paths.wordpress.com.
Gail, I know of many parents that have been in your situation, it is not ideal, but when you are burnt out, or when you can no longer care for an older child that needs extra physical work, you ave to do what is best for everyone in the family. Everyone includes the caregivers too. I hope you are able to find a place that fits her better, hopefully that place is out there somewhere. Praying for wisdom and direction.
The only thing that was hard for us having a special needs child is losing him 11 years ago!!
Diane, I am so sorry for you loss. No parent should ever have to go through that, sending you a big hug.
We also live every day with the knowledge and “fear” of loosing our little girl. So each day with her is a blessing and a gift and we try to do things with and take her everywhere. I’ll not look back and wished that I would have held her more, or cuddled with her more.
My house work, my laundry CAN wait.
Diana hugs to you. Yes, all else can wait!
So very sorry for your loss <3
Ellen, I’m so blessed to read your words and to see through your eyes if even just a little. I am not a mom of a special needs child, yet what strikes me often in reading your writing is how us moms with or without special needs are so much alike. The hard things you listed are almost identical to a list I would make about the hard parts of motherhood. This feeling of being alone, fear that you could/would/should be doing something differently, worrying if you’re spending enough time with each child, comparison, not being able to understand them or meet their needs, wondering about their future, the judgement of others… thoughts that seek to flood my heart, and I need to continually surrender to Christ. Yes, we certainly have different struggles, and different blessings, and different ways God makes beauty from the hard. But, I hope it’s an encouragement for you to know that you are not alone- not only in the special needs community, but also moms and friends and other believers. Love you and appreciate your ministry.
~Jessica
You are pretty spectacular Jess! When I am invited to speak to moms groups about “Beauty in Understanding Disability” I begin by asking parents to tell me what they think my life is like having kids with special needs. When they are done, then I ask them how many of them would actually use those same words to describe parenting. They all do 🙂 You are so right, we all deal with “hard things” as we parent. And you know, even comparing my two daughters with special needs, the challenges are very different for both of them. Actually, challenges are so different for all three of my girls!
Amazing! You’ve hit the nail on the head! You’ve said the words that I think we’ve all tried to say in a way without being offensive or defensive. Thank you, so much!!
The hardest thing about parenting a child with special needs, in our case Down syndrome, is dealing with the system that is supposed to support her. While we have had caring case managers, wonderful early intervention therapists, and a supportive school administration, having to go through endless meetings being told all that she cannot do, what her delays are, and then why she still does not qualify for the requested amount of support is the hardest thing so far. My apologies up front for linking to my own blog, but I wrote about this frustration in this post: http://www.downsyndromeprenataltesting.com/the-world-doesnt-get-to-have-it-both-ways-with-down-syndrome/.
Hi Mark, glad you came over and left a comment. No problem linking your blog here, it might be helpful to someone dealing with the same issues with school and services. I have been frustrated as well with my daughter not qualifying for speech, OT, or PT during the summer when it is clear she needs the therapy.
There are three things which come to mind.
One, I agree with Mark Leach, the system set up to help our kids can do nothing but frustrate us at times and deny our children the help/education they need. Instead of spending time with my daughter, I am struggling with bureaucrats who often seen to ignore my opinion and decide what’s best for Christina.
Two, the tragedy of mistreatment of people with Down syndrome, whether we are talking about the well known arrest death of Ethan Saylor or the new horror in Scranton, the neglect death of Robert Gensiak, 32 who died of neglect at the hands of his own family. We must be vigilant checking up on our neighbors and calling 911 when we have reasonable suspicion of abuses.
Third, of course is the 75-92% abortion rate of babies with Down syndrome. Each child who is aborted is one less friend for Christina, and lowers her chances that someday people with her beautiful features will be accepted as equals and given the same opportunity to change this world for the good.
Leticia, this is such an eloquent response to what I know are passions of your heart. Sending you a hug!
It’s the pooping in his pans at 7 that keeps him from participating in much of life. Watching him sit on the sidelines is PAINFUL. Chronic constipation of DS is horrible and robs him of life and joy. I hate Down syndrome for this.
Oh Ruthie, I can imagine. My good friend is going through poop issues with her daughter, and yes, there is something about cleaning poop in a child you hope would be potty trained that is draining. Hugs to you!
As for advice, we switched Nichole’s bread to sprouted grain bread (Ezekiel, google it) and it has made a HUGE difference with constipation. that, and probiotics. Have you tired that?
Hi Ellen.
In raising our three children (two with high functioning autism, and one with learning disabilities and speech delays), we faced all of the problems that you mentioned here. Our youngest daughter was the least affected, and she sometimes deals with sibling issues.
Now we are dealing with transition to adulthood. Early on, we were encouraged to begin thinking about transition challenges. Even though day to day living was very difficult at that time, it was helpful to think long-term as well.
Now my children are 23, 25, and 27. My son has a good job as a computer programmer (he’s 25), but he’s lonely and has a difficult time making friends (although he is involved with his church, which helps). He lives in another city. My oldest daughter will never drive (she has been told this twice now by the rehabilitation driving program). She has two very, very part-time jobs. My youngest daughter is finishing up college.
Our long term goal was for as much independence as possible.
Ann, you bring up such a good point: transitioning into adulthood. I have several friends that find themselves at a loss of what to do. There is so much available for the younger years while the kids are in school, but what happens after they graduate?
The woman who encouraged me to think long-term about my child was a former nun who had married late in life. She had adopted several autistic children, and was nearing 70 at the time. She described how she had raised each and prepared them for adulthood. Some went group homes, and some were living independently.
While I do hope both my girls are able to live independently, I really don;t mind if our youngest (with Down syndrome) lives with us as an adult, besides, it is typical in my Latin culture to stay with your parents until you marry 🙂
Ellen,
Thank you for this awesome post as it puts into words what we experience, too. Our son was diagnosed with Autism less than 5 months ago. He is 4 years old, and a complete joy. I would say the hardest thing for us would be navigating the “system” to find the best programs for him. There is a lot of information out there, and a lot of “opinions.” We sometimes feel like we are spinning our wheels trying to get the treatment he needs and that can be exhausting. However, when we see his face light up and he flashes that smile of his…the fight doesn’t seem so hard or lonely.
Oh Megan, getting started on this special needs journey can be so overwhelming. If you ever need to vent, send me an email.
The hardest thing I deal with is fearing my oldest son’s tomorrow will never come, will I wake up and discover he has been called home? I worry am I doing enough for him? Then I have my youngest son and his special needs and I worry am I doing all I can to keep hm healthy and successful with his future?
Laurie, what a difficult place to be, wondering if you child will have one more day. hugs coming your way. Also, this is for you, because you are enough! https://www.ellenstumbo.com/special-needs-parents-enough/
My 7 year old son has ADHD, with possible high function autism and bipolar depression and anxiety (we’re still undergoing testing and hitting roadblocks all along the way). I have found my hardest struggle is having patience with him and not comparing him to his peers and the expectations I have had or do have for him. It’s also very frustrating to know your son has issues but not knowing how to help him and seeing him struggle every day. He wants so much to be accepted and to have friends. So far, he has friends at school who seem to accept him for who he is, but he is also bullied because he’s different.
I can definitely relate. My son who will be 6 in March did not qualify for extended school services this last summer, which would have been his therapy’s during the summer. He did not qualify because he doesn’t show significant regression. However my son is not advancing either. In all levels he is ranking at a 1-2 in some areas and a 2-3 year old in other areas. This is a significant gap in his actual age. So while he may not regress the gap continues to grow.
We had the same issues with ESY, so I completely understand that!
For E Jaramillo and Ellen – Regarding the denial of extended year services for your children during the summer months.
Not knowing the type or level of disability your children have, but given the gap Mr. Jaramillo notes, a strong argument in support is that if you have a child who already has a “significant” disability, if you child loses or regresses in ANY skill, that itself is significant given the severity of the disability. Noting the gap continues to grow, your son may not be benefiting from his education the following year if he has to try and catch up, if he ever does, to where he was at the end of the school year.
Certain there are more recent federal court cases to review who have ruled on this issue, but back in 1986, 5th Circuit Court of Appeals affirmed the decision of a federal judge in San Antonio, Texas, on the issue of extended year services. The case is Alamo Heights vs. State Board of Education. (5th Cir. 1986, 790 F 2d 1153) Intervenors in this case – Steven G and mom…me. Steven received extended year services as well as transportation, which included out of school district boundary. Your state advocacy agency or other advocacy groups may be able to assist or give you guidance as to how best handle the denial of services you believe your child needs. You know your child better than anyone, and if you believe and know there is regression (which all children, even those not with special needs regress) then be persistent and don’t give up.
The hardest thing to deal with is my sons feeding issues. He was stuck at 20lbs for a long time and continued to grow in length. It has been a constant struggle to get my g-tube fed child to grow and gain weight. Because of all the surgeries, illnesses, reflux, and vomiting he for a long time refuses to eat. Dealing with doctors and the school system who think your neglecting your child because of slow growth is frustrating. It is also frustrating when doctors who have only recently been working with your child think they know better than the parents who have dealt with his issues for 6 years. We had finally gotten the vomiting under control and he was progressing in his feeding therapy and now because of doctors he is vomiting again and has regressed. : (
My special needs daughter is going to be 31 yrs old in Feb. We have two younger daughters that have always helped with her care, but now my youngest will be moving next June after graduation so me and my husband will have to take on the full responsibility of caring for her. The problem is we both work full-time jobs and we don’t want her to move into a SLA home or institution so we are trying to figure out a way to continue her living with us. Both of us have been with our jobs for 20 yrs so one of us will have to change hours, take on a new job or one of us quit our job. As it is we both have work different shifts so one of us is usually home besides a 2 hr difference where one of our other daughters helped with. The system( government) makes it very hard for us to keep her and also get help with someone helping us out. I know things will work out right they always have but it gets very frustrating to fight for some help.
Ms. Garcia, not sure what state you are in, but all states have various forms of Home Based Community Services. These home based programs are in lieu of placing your daughter in a more restrictive nursing-home type setting. If your daughter is at risk of “institutionalization” she has a right to be served in the community, and at home. These are also referred to as Medicaid Waiver Programs.
There is a Supreme Court case – Olmstead Case. Goes to the heart of serving people in the community rather than more segregated settings. Supreme Court ruled all have a right to live in the community with support.
I love this article. It’s so hard to find people who truly understand what this challenging life is like. I’ve got two kid with “needs”, my six year old is PDD-NOS and my three year old is pretty severly autistic. My toddler seems to be developing right on track (an answered prayer). I, myself have mild cerebral palsy and it’s like everyday is lived in survival mode, even when my husband is home and not deployed. Thanks for speaking my mind!
Tiffany, I am sure people say to you often, “you got your hands full.” I hear it almost about every other day!
I do hear it quite often :.
Ellen,
Thank you for your words, your post spoke my heart! My daughter is two and has complicated issues. My biggest problem is getting people to hear what I want for her. So many people want to help and I feel they listen but don’t really hear my desperate desire to heighten her independence. I think that they are all extraordinarily well meaning and have a “Bag of tricks” that have worked well for them. My daughter, however, is a unique individual, SEE HER, and hear me!
Also, I wonder everyday if I am doing enough. It is solely my responsibility to support her learning and development. Some days are just hard though and we muddle through those days
Ellen, your comment of staying with parents until you marry….made me think of a friend..and brought a smile.
Have a dear friend who has a daughter with Down Syndrome. She’s in her 30’s now and has had the same boyfriend for about 5 years. They both announced that they want to get married. Her dad suggested they wait a few more years to see if they still wanted to get married….that time is getting close and they are still together, so could be wedding before too long 🙂
I think the hardest part of being a parent with a child with special needs is watching them lose what that had, my daughter used to smile and laugh and she would say mama ma and dadada that was 7 years ago, the wanting to know what happened what changed kills me inside but she is still my angel and I love her so much!
I reblogged this and shared my confessions. Thank you. God bless
Reading your thoughts in response was such a treat, love knowing your heart. Once again, a reminder that we are not alone!
I tried to leave a comment on your blog but it wouldn’t let me log in.
Hi Ellen,
Wow all the words you want to say but never do. My dd has an overgrowth syndrome, most people don’t know anything is wrong, and don’t realize our daily struggles, sometimes I would love to scream this from the roof tops to get it through people’s thick heads, no one realizes what our life is like, especially my close friends I’ve had to leave behind and their ignorance more for my own sanity than anything. People should not complain about how hard life is when they have no bloody idea what special needs are like. So well written thankyou 🙂
My son’s who are 10 and 7 have problems as well. As they may not be as difficult as some I have read here, my everyday is very hard. My 10 year old has adhd and what we thaught was autism. But he was tested and they say that he doesnt meet all criteria for autism but he may have something that simulates and has some of the same symptoms of autism. There are things we deal with everyday with hiim, but he is getting better. I use to be called to the school pretty much everyday with him. I think the worst time was when i got to the school and they had an officer and someone else holding my son down on the floor at both ends. I was so angry and so scared for my son because at that time he didnt know why they were holding him down and he was terrified. My 7 yr old on the other hand has severe adhd, ocd and what they are calling a severe mood disorder. But commonly called bipolar. I have to be right with him most of the time. Its very hard to get anything done or spend time with the other 4 children that i have. We cant do things as a famiily because the boys cant control themselves in public. Everyone looks at me like i cant control my children or i cant make them be quiet or slow down. None of them understand the pain my boys go through because they are different. They bot h have severe learning disabilities and my 7 yr old is jus learning how to sound letters. I unersta nd the feeling alone part. Most people dont visit because my boys are so, as i call, busy. And i cant take them to other peoples houses.
Christy, has someone tested them for SPD (Sensory Processing Disorder). It is often confused with autism and ADHD. Have you looked into this before?
The hardest part for me is the unknown future.
I have never responded to a comment board before but a series of recent events pushed me to read this article and these comments-I recently attended a program run by camp directors about the inclusion program at their sleepaway camps. My two “typical” children attend branches of the camp and both have come home asking specific and challenging questions about the special children in their bunks.
As a parent (and an educator at many levels) I do my best to answer their questions and encourage them to have patience, to reach out, to notice the special qualities of all individuals, to be the kind of children I know they can be,
but without communication from the camp about the approach that has already been taken by the staff, and perhaps even about some of the specific challenges of these children, I find myself at a loss to partner with the camp in building the open and inclusive community they value so highly. I have no doubt that the camp IS taking steps to build an inclusive community but I just don’t know what those steps are or how I can continue to work with my children when they are not in camp. For the record, I have experienced the same thing with my children’s school.
I know there are very real issues of pain and privacy for families with special children that I can’t even begin to appreciate-so I know that what I am posting here may not be popular.
How can schools/camps/organizations include families of all campers in the effort to build an inclusive community?
I love that you are asking! And you bring up a great point, communication with ALL people that come in contact with our kids. let me think about this more and I will get back to you. Thank you so much for commenting, your voice is important for us special needs parents too!
Thanks for acknowledging my perspective
Thank you. I have a 15 yo son who just was diagnosed with Aspergers 4 days after his 14th bd. I always knew but never knew what to call his ” quirks”. It’s so frustrating to deal with people’s judgements daily and it actually became worse after we got a dx. We don’t treat him any different. He is expected to keep at least a 3.2 GPA and participate in 2 activities per year. But I’ve been told essentially I ruined his life because he now has a label. My thoughts are the label and treatments are worth it. I don’t want to walk into his room one day and find him dead because he could not cope any more.( sorry lil ranty) Your article hits the nail on the head! It speaks to what I’ve been going through since his early childhood. Even though he speaks above his age, finding anything that is wrong or bothersome or good or exciting with him can be an excruciating experience. Friends for me are basically internet based. It’s crazy. I wouldn’t trade my life for anything. As much sad and frustrating there is, I have just as much, no even more blessings. Thank you for sharing.
This was so touching. My 8 year old has ADHD and ODD and I struggle every single day. I feel like no one understands and so many people don’t even believe in ADHD. The school calls me a couple times a week because he has meltdowns. He cannot communicate his feelings like other children so when someone is not very nice to him he over reacts. It had gotten so bad his teacher had his desk facing the wall and they wanted to hold him back from a field trip. I feel like every day is a struggle and I feel so bad for him because he just wants to have friends like other kids.
My 8 year old g-daughter that we raise has the same issues. She is ADHD, ODD, anxiety disorder. She does well in school, most of her problems are at home. We have a hard time having other grandchildren b/c she is mean to them after a few hours. Getting family even to understand she has issues and how hard some days are is not easy. They all think that we have just spoiled her too much and should just spank her or take every privilege away from her. She gets so anxious about doing thing that if she knows too far in advance, she usually has issues with the anxiety and then can’t make it to the event We have such a hard time with discipline it gets very frustrating. We have very few friends as our age group does not have kids living at home anymore and the people that do are so much younger than us!! Frustrating all around.
Wow! I feel like your words came straight from my thoughts! I never knew others felt exactly the same! I think the hardest part of our lives is how my son is excluded from doing things he loves because he is in a wheelchair. When he is at school he watches other kids run and play and I see the longing in his eyes. I help him to play as much as I can but since he’s growing I just can’t last as long as he wants! It breaks my heart. Not knowing what his future will be is my biggest fear. While I take care of him I know he will be ok but when he’s on his own who will look out for him?!?!
I have a 16 y/o daughter with mild ataxic cerebral palsy. I think the hardest part of parenting a special needs child is knowing her childhood friends are growing up , playing sports and going on dates. They no longer seem to have time for her outside of school . She has become wheelchair bound and her speech has never been clear. She is a typical teenage girl, she has the mind of a teenage girl but her body does not allow her the same experiences most teenagers have. It makes me sad to see her sit home of an evening or I will take her to a sporting event and she sits alone. I am proud of her and everything she is. She always has a smile on her face and seems to take life head on. However I often wonder how happy she truly is and what I can do to make her life as normal as possible.
Brandy, you have touched on something I fear, something that I know many parents and older teens/young adults struggle with. This, indeed, is hard!
My hardest part is not having a diagnosis. It’s been 4 years, and we are still searching
Jo, yes, cat commented that here too. I can only imagine how hard it is not to have a diagnosis.
The hardest thing is your child not having a diagnosis. It takes longer to come to terms with the fact that your child is never going to be normal and not being able to participate in normal everyday activities or outings with the family. It’s hard seeing everyone else grow up and seeing my daughter still behave like a child. You never see the light at the end if the tunnel. You just keep traveling hoping that one day we will see the light.
But then you see the light in a different way. My daughter is my light. Her laughter, her wittiness and her cuddles are my light every day. And if she wasn’t there, my life would be complete darkness.
Cat, I hear this often, and I can only imagine how that “unknown” is so hard!
I struggle with feelings of inadequacy – of not doing enough for my daughter when I find other kids with the same diagnosis who are younger than her but are so much more advanced than her. I also struggle with friends of daughters the same age as mine who won’t take the time to play with her because she can’t keep up with them.
It is sometimes hard to watch friends with younger typical kids play sports or succeed at things that my child several years older cannot do. It is tough but oh how I love her so!
Dina, the comparison game is hard! I do it, and when I do it makes it worse, especially because I wonder if it is my fault, if I could do more. So you are not alone, and like you said, this love, this amazing love we have for our kids is pretty amazing!
Great post! My husband and I have gathered several special needs kids through the foster care system. Five of the seven kids we still have at home have delays, and one of the hardest things for me is remembering what is developmentally “age appropriate” for each one. My 12-year-old daughter generally functions like a 6 or 7 year old, my 15-year-old son acts like a 9-year-old… Making my conversation and expectations realistic for each one is complicated, and the kids and I both get frustrated.
Each one of my kids is spectacular! The ones with special needs have to work so much harder to accomplish the same goals, and I am constantly in awe of everything they do. My “typical” kids do everything they can to help and support their siblings, including practicing physical therapy assignments, playing “speech therapy,” and helping them finish chores. There are definitely hard things, and I constantly wonder if I’m doing enough, but I wouldn’t change a thing – this family God put together is AMAZING!
The struggle that I am having is the communication. I struggle everyday with the thoughts of “could I do something different? Could I have talked to him more when he was younger? ect….” It is a comfort to me that I am not the only one to have these thoughts.
Rose, no, you are not alone! (And we struggle with speech the most here too!)
Loving my daughter has never been hard, accepting each new diagnosis has been possible, we’ve managed to find a way to work through the difficulties you so perfectly explain. But for our family the financial stress has been the hardest part. We’ve been supported by family, friends, church, community etc etc over and over and it just cycles down the medical drain. We are in need of help just as much now as we were when the bills started piling up. It’s so daunting to carry that weight every day. A close second is the unknowns. Every time she becomes critically ill, I think to myself “is this it?” it’s almost unbearable to process.
Lisa, that is hard. I am praying for God to provide for your family!
My son has Down Syndrome and is 22yrs old. Now that my older sons have moved out on their own, it’s just the two of us. What I struggle most with now is the fact that I have to leave him home all day while I go to work. There are no programs around me where he can go (if there are any, they are too far away or too expensive). The constant worry is exhausting. Then there’s the guilt. I feel like I’m not doing enough, trying hard enough, etc. Worst of all are the times when I imagine what life would be like if he didn’t have DS. I feel so selfish for wanting to be able to have a real conversation with him, for wanting to be able to go somewhere without him, for getting upset with him for something he can’t help, etc. I wouldn’t change him for anything but it sure would be nice not to have to deal with it all alone.
Oh Caron, I have heard this from so many parents that have older adults, what to do after all the programming is gone? There is a huge need and gap in here, and I hope we are able to change it!
My daughters special needs are physical. She walks with arm crutches and wears braces on the lower part of her legs. The hardest part right now is all the stares that go on from strangers no matter where we are. This is do in part by the lack of education from the adults. When kids stare and ask there parents “whats wrong with her?” They quietly nudge their child along and treat us like we have leprosy. It’s hurtful as her mom when others don’t treat her the same as everyone else. She just wants to fit in with her peers and not be looked at as any different.
Lisa, yes, we encounter that too! If I can, I make a point to talk to the kids, so that kids and parents can learn!
Oh Yes… I do that too 🙂
Something I struggle with is “well intentioned” friends who think they can tell you what you should do for your child. They think that they know what is best for them. I have had to deal with some very hurtful comments lately. I may not always make the best decisions, but nobody knows my child better than me.
Oh yes, friends…or family!
The hardest part for me is letting go. Trusting that he will be okay when I cannot be there to care for him.
I can see this will be the hardest part for me in the future…sigh.
The hardest thing for me is watching my son gain and lose the same skills over and over again. I feel like I am continuously watching my son dying. One day he’s here, the next he’s gone; sitting, drooling, staring into space.
Praying for strength and comfort for you Jolene!
My last baby was born very prematurely. In the hospital for 3 months. Therapy and all that for his first year and a half. Early diagnosis of autism right before he turned 3. I can relate to do many of the things on your list, but the one that suck out to me like a blinking neon sign is feeling like a failure at everything. I didn’t know other special needs moms felt this way! I have NEVER struggled with any negative thoughts or feelings about myself…until sorely after I had my last son. I thought it was related to post partum depression or something, but that feeling of failure has never left. I am teary eyed right now at the realization that I’m not alone! I have felt like a mental case, and didn’t dare share those feelings, so the comfort I feel to know it can be normal…amazing. Thank you for sharing!
Ally, no, you are not alone, and you are enough!!!
The hardest things for us is not knowing who will take care of him if something happens to us because our parents have passed on. He does have brothers that are older but I just cant think of them giving up their lives to care for their much younger brother. Another hard thing for us is him not being on the same level as his peers as he might always be behind. Just reading your article brought me to tears because I feel no one understands but I see there are others who do. Thank you
Tamie, no, you are not alone!
We have three children we chose from foster care. All three are ADHD, OCD, separation anxiety, and learning disabilities. Sometimes I feel overwhelmed because I feel like I can’t do enough to prepare them for the world in which we live.
My son is 6 years old and everything here hits home!!! Anthony was born with Spina Bifida, hydrocephalus, and a chromosomal abnormality that we still dont understand yet because its so rare. He is such a joy and makes us smile so much but yes it is tough. He has alot of extra needs and its been difficult for us. This past year we have had to start cathing him every few hours to keep him dry as his bladder doesnt work as it completely should. Right now this is my job as other family members have a difficult time with it, this making it very tough because I have also been very scared of this but I know its what is best for him and I am hoping that one day he can wear big boy underwear like his friends and we dont have to explain why he has a diaper on. But its hard when this responsibility is solely on me. I also have to handle his bowel program too, he has paralysis in his bowels and cant poop on his own.
He was in kindergarten this year and I am so thankful as to how the students have taken him in. I want him to be like the other students and get invited to playdates and birthday parties. We just had our first invite to a birthday party of a little girl in his class today. His speech is very delayed but he has come a long way this past year. No he is no where near the other kids in his grade but I am just so happy with the progression that he has made. He LOVES music and is singing to everything. He loves watching his big sister play soccer and baseball, his first game with the Miracle League is tomorrow. Its nice to have others who truly understand.
Cathy, I hope the birthday party goes well! I use those as an opportunity to get to know other parents and share about my kids 🙂
Cathy. My daughter is 12 years old. She has Spina Bifida too. I would love to speak with you if you are comfortable doing so. Feel free to email me and we can exchange phone numbers if you are interested. I’m in NJ. Looking forward to hearing from you. 🙂
Lderrick92@me.com
My son is 7 and is diagnosed with a rare genetic disorder. He is also diagnosed with Intellectual Disability, ADHD and Autism spectrum disorder. He has a normal functioning 12 year old brother, in which he adores. He is not potty trained, he must be kept an eye on 24/7, because he has no understanding of danger and will elope at any moment and has a vocabulary about 20-30 words. He cannot have a conversation with you, can answer yes/no questions. Our biggest concern is what will happen when we are not here to take care of him, because it takes s lot of patience and it consumes every minute he is awake. He is very affectionate at times and loves being with his family. I pray he becomes more independent, for his future and if we are someday not here????
The hardest part(s) for me are the social aspects. All of them. From losing friends, to the social acceptance, trying not to compare, and trying not to unfairly treat my older typical daughter. My son is almost two with Spina Bifida. My daughter is 11. She has learned so many things in the last couple of years (as have we). She often gets left in the shadows. And though my son is still young, his physical disabilities are becoming more and more apparent. We get stares of all different types, we get comments, and we get left out. A lot. I have great friends, who try to include us… but they often don’t realize how difficult it is for me to pack up and go – IF I don’t happen to have a doctor appointment or therapy (which is usually the case). Wheelchairs, 3x’s the amount of diapers and wipes, not to mention he’s a HUGE kid in general! Just thinking about it is making me exhausted. 🙂
Kellee, I hear you!
Kellee- my daughter has Spina Bifida too…she is 12. I would love to chat with you if you are interested. Feel free to email me if you want to and we can exchange phone numbers. I’m in NJ.
Blessings, Lisa
Lderrick92@me.com
Thanks for saying this important stuff. My son is pretty high functioning. I think the hardest thing for me is to watch him not really have any friends. He has one but they are pulling away…i don’t know why. So his older sibling ends up being the one that must do all the friending, including, including him with his play dates and sleepovers. Sometimes i feel bad for the older one as i know he needs his friends without the younger bro hanging around. But it is what it is. I wish i could find a social play circle that would offer up friend time. But that doesn’t exist.
Krista, since my girls are little, you just made me think about this and what it looks like in my own family. Yes, I see that happening already, and I think I will try to be more intentional about this!
I have a 1 year old with schizencephaly and the hardest thing is people knowing about my son and his diagnosis but not understanding it and then saying things like, “oh one day when he driving, or talking to girls or when he’s playing sports, etc.” and knowing that he will never do those things that normal kids do. I love him to death and me and my wife have dealt with the grieving and understand him..it just kinda takes you back to that stage when people say those types of things and knowing they mean well but it hurts.
Wesley, yes, it is hard when people don’t understand, or when they look at you like you are crazy because THEY cannot see what you are talking about.
My son is non-verbal autistic. He is 7yrs old.The very hardest part is the communication. I have a “typical” 11yr old boy with no disabilities. We can communicate with my 7yr old to an extent. And vice versa, he can communicate with us..to an extent.
I worry so much about him not being able to communicate to me about things that happen when I’m not around. Especially at school. I love and have gotten to know very well all of his teachers at school. So, I know he is being very well cared for. But, I always wonder what goes on. If someone is mean to him, etc.
Everything you said is right on the money. Especially, about feeling isolated in public. He has issues with fine motor skills, so sometimes he needs help feeding himself. So, when I’m in public, I always think everyone is watching me and thinking “why is she feeding her 7yr old” or “why is she carrying a diaper bag for her 7yr old?”
But, I recently received some perfect advice. Some of the worst parenting mistakes I have made were when I was too concerned about what a complete stranger was thinking rather than caring for my own child. So, I’ve learned to just forget about everyone else and take care of my child in the way he needs to be cared for. Same with my 11yr old!
Thank you for putting your words out in the world for families like mine!
Emma, that advice is right, don;t worry about what others think. We put enough pressure on ourselves, we don’t need to worry about others.
Hello, I’m very grateful to come upon this article! My husband and I adopted seven kids and as it turned out all of them have mental and or physical needs! Three youngest in particular are diagnosed with Ehlers-Danlos Syndrome and the youngest also has speech apraxia and autism. Our lives have not been the same. You described exactly how we feel at a time when I needed it most. We struggle daily to find help, to educate people about this rare syndrome, to gain acceptance from others, and most off all stay on top of it all. The hardest part for us is finding balance. Finding alone time within our marriage as we have no help. ( not from a lack of trying either) and balancing the needs of all the kids being careful to meet all there needs! Peace and love!!
Janelle, praying for you and your family! And thank you for your willingness to be a forever family to your seven kids!
The hardest thing is that everything seems like a battle. Going to the store, getting dressed, etc. We have victories. But the next day the very same victory can become a battle ground. I always allow 10-15 minutes extra when going somewhere to allow for “melt-downs”. Difficulties that you experience when they are 2 years old are still with them at 10 years old. It is hard to see the growth when you are stuck in the everyday.
We like to refer to our biggest challenge as “The Ground Hog Effect” properly named after the movie Ground Hog Day! It’s waking up to the same issues day in day out over and over! No matter how many services, methods you use, love you give, it appears it’s not enough.
Don’t take this all negative, because there is plenty to be thankful for!
I haven’t read all the comments to see if this has already been said, but at least the list of “hard things” in the original article gave me some comfort of “maybe I’m not so different after all.” Because…having my firstborn be neurotypical and then having my 2nd with severe medical and developmental issues, I think from this list I can say that those are things ALL moms (dont know about dads) struggle with. Especially stay at home moms. There are certain things that parents of typical kids never have to deal with…EEGs, IEPs, the initial loss of who you thought your child would be….But the rest of it, I think a lot of moms feel….it’s just as a special needs parent you feel it exponentially. But, I also rejoice over the little things more than others with typical kids do, too. It’s like life is just more “on” all the time, if that makes sense. Sometimes that’s a blessing, and sometimes it is exhausting. But at least based off that list above, I’d say if we try to explain special needs parenting to another parent, I’d say It’s just like what you do and worry about and face, just multiplied.
Heather, my husband likes to say, “The highs are high and the lows are low.”
My daughter I adopted has FAS and with that she cannot process cause and effect. It is very frustrating to deal with. She can to the outside seem normal but at 12 yrs old she is maybe a 5 yr old. It is a constant worry with her and now with the added hormones she is challenging me. I know how far she has come but she seems to be stalling.
I thought so many things were hard raising my two children with autism. Many times I am tired and at breaking point. But the hardest thing for me was the day my daughter was in casualty paralysed, vomiting, choking and I thought she was going to die. It took the hospital over 2 days to diagnose a spinal and a cerebral stroke. Things are still hard, I still break down but every day with my children is now a blessing. It puts the rest of our lives in perspective.
THANK YOU!!! I have three children. My youngest nearly died at birth and has cerebral palsy. She’s fine cognitively and does have speech, but physically is about a year old. I struggle to make people understand that she doesn’t need to be treated or spoken to like a baby or a dog. My son has autism which is genetic in my family (has absolutely nothing to do with my daughter’s CP). He’s fairly high functioning, but I struggle to make people understand that sometimes he just doesn’t understand. Then, my “typical” oldest daughter has ADD and I feel SOOO guilty that she fell through the cracks while I was treading water taking care of the other two. I often feel like there’s nobody like me, but I know it’s not true. I go to a caregivers’ support group and that helps.
I am a single mom. I had Isabelle when I was 21. She is now 8. Isabelle can’t walk or talk or communicate. She also has a g tube. Although she can crawl she puts everything in her mouth. She need constant supervision. I think trusting someone with Isabelle is my main concern. She could put something in her mouth or something terrible could happen to her and I wouldn’t know. It’s also hard not having a husband for support.
Laura I hope you can find someone that is trustworthy.
There are two things that are hard for me.
1) is the judgement and the ignorance of others who have not walked this road, but think they know my child and what is going on far better than I do.
2) The school system. I thought the school system would be a source of support and understanding, welcoming my children into their building full of professionals ready to offer everything they needed to succeed. Instead we got the opposite. We felt real discrimination against our adopted children with special needs. I’m still fighting it. This is the hardest hard thing I’ve ever had to do. Ever. Its breaking me.
Yes, other people who think they know better is hard to deal with, and the school makes a huge difference. I don’t want to move because we have an amazing school, but I know our experience is not often the norm.
The hardest part about raising my special little girl is watching my other two sacrifice a normal childhood, and doing it all solo. All 6 specialist. All the meetings and appts… All without her father or any support from him. Having to love her and her differences enough for two. Facing all of the unknown and the unknown with grace and strength, all by my self. She has definitely made me stronger, and a better person all around. Honestly, now that I think about it, I wouldn’t want to share her now. Maybe some financial support as I cart her off to different states but I’d rather be selfish and keep her all to myself.
🙂
Summer, my deep respect for special needs parents doing it alone. I cannot imagine. You are a great mom.
I am a special needs teacher frustrated by a system that does not provide my students with the services they need. Iam bullied by administrators. I am considering leaving education and going to work for some sort of non profit that advocates for kids and families. I need training as a parent advocate. Any suggestions? Sue
Depending on your state, you can look at getting training through your PTI. I have a friend on this, so as soon as I hear from her I will come back an update 🙂
For me the hardest part of parenting my daughter is how constant her care is. She’s 22 and has the same needs she had as an infant. No matter what else is happening in the world at large or my little corner of it she needs changing, feeding, moving, grooming, medication, etc. Over the years I’ve had illness, surgery, and extended family crisis and my first thought is “who will be with Hillary during this?”. It complicates everything. That is the hardest part for me. This is a great article! Thank you for writing it!
Thank you Sue, yes, the growing up is tough.
The hardest part for me is worrying about his future. I worry everyday about what would happen to my son if I’m no longer around to care for him. I worry about him becoming an adult because he has huge behavior issues, which I pray will get better as he gets older because the patience that people will have for a misbehaving child is so very different from a misbehaving adult. I fear he will be physically abused by those who doesn’t understand him. I just pray I’ll live as long as he does because this world can be a cruel place for people with special needs.
For me, the lack of support from many family members has been the most challenging thing about having a child with disabilities.
Our son has challenges with impulse control (among other things) because of his disabilities, and the focus always seems to be on his behavior, rather than who he is as a person. It’s been so hurtful to have him excluded from events (no invite to a family wedding), and told not to come to parties if his behavior isn’t on point. We’ve been questioned as to why we don’t “discipline him more” (oh — if they only knew!), and he even was threatened by one family member at a gathering last year.
We could really use a break — a gentle spirit to say, “Come on over — we’ll play with him, so you can get a break!” instead of all the judgment. But that’s not our reality. Sadly, it’s fractured some of our relationships that I hoped would be supportive. I’m working to build more of them, with other people (who aren’t related), so we can have a network of people who accept him as he is. The isolation is horrible.
Julie sending you hugs and praying for you and your family. remember you are not alone, at least not at a heart level, many of us get it.
Grieving the loss of the child you could have?! My parents just died, their parents are grieving, you’re just sad that your child is “different” and doesn’t fit your stepford wife mentality I find that remark in poor taste, so would both sets of grandparents
Tiff, I am so sorry for your loss, from your comment I can tell you are hurting, and I cannot imagine losing both my parents. Praying for you and your family.
The never ending worry and fear or what tomorrow will bring. The worry of who will take care of our children if something happens. As a mother I carry responsibility to be the medical advocate, educational advocate, the mom, the insurance company advocate when we are denied services. It’s a never ending struggle , we want wants best for our children, and we constantly have to fight and defend our position, while pushing our kids to reach their goals and hope we are doing enough everyday .
Every word of this article rang true for me. I have felt each emotion as specifically as you point out. I think the hardest thing for me now as my daughter nears 40, is what’s going to happen to her, when I’m gone. My daughter is a blessed individual with her own apartment; an accomplishment that goes beyond my wildest dream. For her it was a chance at freedom and individuality; but still she needs my constant input and care. How is it all going to happen for her. Can anyone in this world care as much as I do for her? This is where my faith comes in. I know I have to trust in the One that brought her here for her future and mine. I think this is a concern for all of us with a special needs child; no matter the severity, is the what now question. And thinking back on the early and teen years and even young adult years; having a “Special Parents Support” group is the best thing that ever happened to any of us. We wanted our “kids” to experience everything like partying, travelling, etc. This group provided that not only for our special kids but for the siblings to come together to find a voice with each other as well. Great article!
I only wish someday my daughter will get to live on her own, she is 34 years old. If she ever does live elsewhere she’ll still need someone with her 24/7 to help with her daily needs. I think she would like to be more independent but she’s an only child and has workers to take her out into the community and she’s involved in a lot of different things like a program she attends daily and special Olympics. We never ever went on a holiday without her until she turned 30 years old and I never dreamed we could ever trust someone else to take care of her. It’s so stressful when we feel like everything we do revolves around what she wants to do and we love her dearly but none of us are getting any younger. We also worry constantly about what will happen to her when we are no longer around to provide for her. Any parent of a special needs child knows exactly where I am coming from
Communication is the biggest. My son is non-verbal and doesn’t understand a lot of language to begin with. As time is going on the social isolation is also becoming hard. Family that used to invite us to special events and occasions no longer do or we have one that has made it clear that our child is not worth his time.
It’s just all so overwhelming at times and I don’t think people with “typical” kids can even begin to understand the amount of heartache special needs families endure and over come. From having to come to terms with their child’s diagnosis to family and friends creating distance as a result. Not to mention how hard it is to take your child in public sometimes never knowing who might say what. And the stares…
As I was reading this my eyes filled with tears as I read through the comments. Sometimes I feel as though im in my own little bubble and no one understands how hard it is. My daughter has IQ deficit disorder. She is currently 14 but school work she’s on a 2nd maybe 3rd grade level and her every day skills keep getting better!! People don’t understand just because she physically looks normal doesn’t mean her brain works like everyone else’s. I live in fear everyday that something will happen to me and I won’t be there to help her and push her along. She is going into highschool this coming year and all her classmates keep talking about college unfortunately she won’t be able to attend she will not have the level of education as other children. How do you explain that to your child especially when she wants to be a NICU nurse. She has a heart of gold and we try to take it one day at a time!
Thank you for this article!
The hardest thing for me is to accept the fact that sometimes I get frustrated with him….and can be short and snippy with him….then I look at his beautiful face, and I melt. He is pure. Pure Joy. Pure love. Pure acceptance. It’s not his fault, who am I to be frustrated when he asks the same question for the umteenth time? I know parents out there who would do anything for their child to talk.
I am so lucky to have Grant. He has taught us all more about life, love, acceptance and what it’s all about…..He is 20, and was diagnosed with Fragile X at age three. Hard to believe we have come so far. Thanks for this article.
For me the hardest thing of having twins with asd – apart from the pain of trying to understand one twin who is non verbal, is the not belonging anywhere and the isolation. It’s impossible to take them anywhere on my own and set them free to play safely.
Alison yes! Erin and I did an entire podcast on isolation, check it out https://www.ellenstumbo.com/episode4/
Is it possible I can copy and paste what you wrote about confessions of special needs parent onto my blog. It’s perfectly said and exactly how I feel being a parent of a child with a life threatening disease is tuff. I’m just starting my blog and what you wrote is well said.. I don’t know if I could even copy and paste I thought I’d ask you.
Jennifer, congrats on the new blog! Write down your own thoughts, then I prefer that you link back to my post and not copy it. Your voice is important, and you have something to say. Even if it is similar, you have your own life experiences and take on things. Then when you write it, let me know so I can read it!