OT: Adjusting to life with a special needs child

[isla bonita]

Both of the writings were beautiful. It has been hard work. Also worth every ounce of energy. We have a wonderful 16 year old to show for it. Lucky us.

 

[SueM in MN]

I want to send hugs out to everyone and I wanted to say something really meaninful, but just am not in the frame of mind right now to write something like that. What I did decide to do is look back for something I posted a few months ago.

I'm reposting a copy of that and hope you enjoy it if you have not seen it before. Here's a link to the thread it was from, plus in the first line, there is a link to a thread that D,L and K's mom posted on the Theme Parks Board in the same time period.
At the same time as D,L and K's Mom was posting her excellent thread on the Theme Parks Board, I was having some of the same kinds of thoughts of how welcoming or unwelcoming places (or people) can be and how I am so incredibly lucky to have my DDs, both my "typical" DD and my youngest DD who is multiply disabled.

Youngest DD and I were on our way home from the one place in the world where we fit in completely. Everyone in that little "world" understands what we are going thru because they have been there, or somewhere nearby.

The "world" we were in is tiny; one big room about 30 by 40 feet, one small (but wheelchair accessible) restroom and another room that we sometimes use if someone has brought treats for a birthday. When that happens, several of the participants just lick the treats, some are fed in messy mouthfuls shoved into their mouths by mom or helper, some can't eat anything by mouth and devour the treats with their eyes. Some don't look like they notice we have moved from the large room, until one girl cries (more like screaming) until we have finished singing Happy Birthday and several of them get startled and arms and legs jerk. My DD will never eat anything when we are away from home; afraid she'll make a mess and suspicious of plastic cutlery - she has broken one too many plastic fork when she couldn't control how hard she bit down. Her treat has to be wrapped up in a napkin and placed into her bag; where I may be able to remove it later without her noticing (or maybe not and I'll find it in a few days, a sticky mess of frosting crusted napkin.)

In this world, my DD is not one of the most disabled, she is actually one of the least disabled. Welcome to the world of the Uniquely Abled Dance Class. My DD is the one with glasses in the back row on the far right of the picture. The one who is obstinantly looking out of the picture. This picture was taken a few years ago; the one they used before was better (at least of my DD). The photographer's helper that year was a cute teen guy. The helper when this picture was taken was a middle aged woman; not the same effect at all.

And Uniquely Abled we are. Some participants can walk a few steps, some can talk, some can understand everything that is said to them, some can drive their own wheelchairs, but no one in the room can do all those things (except us helpers, parents or other family members who are watching). Some participants are wheeled around the room, as insubstantial and apparently as unfeeling as ghosts. Sometimes a piece of music or movement breaks thru to one of those participants and they smile or make a sound. In our world that is a cause for group rejoycing because we know how precious that connection with the world is for the parent of that child.

Some of us envy other parents because of things their kids can do that our child can't:

• I envy J and N because they can talk. (J and N are in the first row, the 2nd and 3rd from the left).
  Mothers of typical children wouldn't understand that because, by typical child standards, J and N can hardly talk at all. They speak in quiet, breathy voices with pauses between words as they struggle to find a word or force it out. My DD is one who can understand, but not talk. She's sometimes very noisy, but doesn't have the ability to say any words that people in the "normal" world can understand. She talks in signs, gestures and what Ursula in the Little Mermaid calls "body language".
• J and N's moms have told me that they envy me because my DD is fully grown, but is tiny (5 feet tall and 86 pounds), a perfect size for transfers. J and N live in a world of using Hoyer lifts to move from place to place because they are too heavy to be lifted and can't support their own weight. I'm lucky because, not only is DD tiny and light, but she is also able to stand and walk if I hold her up (clumsy and lurching, but walking and easier than using a lift).
• I envy LR because she does a good job of controlling her computerized talking device (even though she has to do it with scanning and controlling a switch with her head). (LR is in the front row, right over the word "the").
• LR's mom envies me because my DD can drive her wheelchair with her hands, instead of a head array like LR has to use because she can't use her hands.

I feel lucky and don't know how some of the parents survive their life; I don't know how I would.
Some of the kids hardly react to anything and there is seldom a connection between them and the outside world. That would be hard for me, but they seem to cope. Maybe they are watching me and wondering how I cope with DD, who connects with me a bit too much sometimes. My DD sometimes bosses me around - everyone in the class knows the drill. She is obsessed with my purse. Sometimes, I have to wear it. Sometimes it is supposed to be on the floor in a specific place. If I leave it by my coat, she's OK for a while, then gets an absolutely paniced look on her face until I put it where she wants it to be (it's my purse, if anyone is paniced about where it is, it should be me). The back of her wheelchair would be the logical place for the purse to be, but heaven forbid I put it there, that is not part of my DD's "rules of conduct" to have it there.

I also feel lucky that my family doesn't have a "before and after" like some of the parents do. Some of them put a "normal" child to bed one night and then something catastrophic moved them from the world of "parent of 'normal' child" to the world of "parent of special needs child". We didn't have any sudden uprooting like that; just a slow realization that our child was not following on the path we thought she was. I don't know that i could handle the fast uprooting.

We feel lucky and thankful - today 2 kids are missing from class, but not for any bad reasons. One is on vacation and one is in respite care because her parents went on a trip and she had no way to get to class.
In a "typical" dance class, kids might miss class because they forgot the date or had car trouble. In our world, missing the class is more likely something more ominous; one boy had pneumonia earlier this year, my DD missed classes a few times because she had seizures the night before and was too tired, a year ago one of the girls got bacteremia from an infected baclophen pump and nearly died. Today, our world is lucky because no one is sick.

We feel lucky and thankful because in a world where parents without special needs children often don't stay together, most of the parents in our class are. And some kids have entended family members who come somtimes to observe the class. I feel lucky because I have a DH who loves me and adores our DDs (and they him). I have an older DD who is a real blessing. I feel blessed because she has found a young man who she loves and he loves her back. And both of them love my younger DD.

We feel lucky and thankful that a wonderful woman named Nancy started this class - and provides it for us all free of charge. All because she had a friend who went blind and was sad that he would not be able to take dance classes any more. Nancy couldn't see a reason why not and started dance classes for people with visual disabilities and hearing disabilities and Developmental Disabilites and our class, where all the participants use wheelchairs.

We feel lucky and thankful that we have others we can talk to who understand what we are saying. After class, we talk about things that wouldn't make ANY sense to most people; talking in a sort of verbal shorthand about power wheelchair settings and computers that talk for our kids and more usual things like glasses and bras for our teen girls (but from a different viewpoint) - how many parents are trying to deal with the problem of keeping glasses in place when the child moves their head on the headrest, or how many times you can bend wire rim glasses back into shape after they have been run over by a power wheelchair. I'm pretty confident that most mothers of teens have not discussed how to keep a bra on their teenage DD because her athetoid movements make her "slither" out of it.

I am lucky and thankful that I happened upon the DIS boards in 1999, which led to this board starting and being able to share joys and sorrows and WDW hints with other people on this board. The people in the dance class world are mostly unaware of the DIS world that I am part of, although one of the moms gave me one of the most poignant suggestions I had for this board - her DS can't sit up without his wheelchair which has trunk pieces that "hug" him into his wheelchair and a head rest that cradles his head. When they went to WDW, one of the CMs at one of the photo shops that superimpose your picture against a different backround in the computer devised a way to digitally remove the wheelchair from the picture. With that piece of magic, the woman got to see her son for the first time without his wheelchair.
True magic to her.
And we all understood and were happy for her.

So, I wish you all feel as happy and blessed today as I do, as we discuss little things that just might be huge for the person who we are discussing with.

 

[wide awake]

I understand what the OP meant when she looked back at her previous life and realized that there hadn't been many challanges...because with an ASD child there are always challanges. Not only do you get to deal w/ the handicap, you get to do medical research in your spare time. There is a passage in "Let Me Hear Your Voice", when Catherine Maurice talks about wishing her children had something that a doctor would say "Do x, y, and z"...and there isn't anyone to do that. I will say that you, the OP are lucky that your child is so young. When my 15 yr old DS was diagnosed in 1993 ABA was all there was. Now you have so many other options. If one doesn't work just go to the next, that is what I do. Just keep pushing them up one step at a time.
On another note...I realize that DS's handicap has made me less understanding of other people's issues. I was reading a trip report today, Zzub...very funny, he and his family sound like wonderful people. Anyway, turns out that his wife just had a miscarraige at 10 weeks...Zzub was very open about their grief, and I should have been moved. What I actually thought was that if that is the worst that happens to you and your family you are one lucky guy. Trust me, that didn't make me feel good about myself. I had a stillborn at term, and then DS's autism. I have a tendency to measure grief, and I shouldn't...because there are plenty out there in much worse situations than I am...so then I worry about falling into those catagories. So not all of us with SN kids are nice. Maybe I just haven't grown enough...I need to reread "Red Shoes for Nancy"...the mom in that one was a little witchy at the beginning, but she just kept growing as a person. A great book even though Nancy wasn't ASD so the mom didn't have that special gift for writing that I've noticed in lots of the ASD stories...the Noah books, Catherine Maurice, Clara Claiborne Park, "The Seeing Glass"...I will say though that these kids don't have what ours have..."Evidence of Harm" is our story.

 

[tinkertiff]

Wide Awake -- Yeah, I'm just realizing how much "Evidence of Harm" IS our book. Literally. I just bought it AND researching the issues AND learning the diet, etc. Seems like I live, breathe and sleep Autism some times, but you have to -- you just find the strength to do it. You helped me on the GFCF diet questions. No question -- being a special needs parents has changed my life. In many ways - for the better. I have such empathy in my heart when I see other special needs parents out -- and for their kids as well. My son was diagosed at 22 mo. -- now he's 9. Its been a long journey -- true, but wow, I found out things about myself that I didn't even know where there -- you know?? I'm a different person in sooo many ways.

FOR THE ORIGINAL POSTER -- Knowledge is power! I cannot stress this enough. From dealing with family, doctors, and the school system -- you have to learn as much as you can to be the best advocates possible for your child -- That will help you and your hubby as well. Give yourself some time to adjust -- but then dig deep and go for it. You have to be united for your child's future. A divided family or split parents isn't going to help -- will add more stress to your mix. I think communication is critical. My husband and I took a few days and grieved/talked -- I saw my husband cry over our son's diagnosis. We realized we HAD to pull together to help our son. No one is going to help your child like you will -- you and your family are all they have -- Your child will depend on your fight and fire for their future. Also, realize men and women are very different. Your hubby will deal with this differently than you will -- I know mine did, but we were united, nonetheless. I had to be sensitive to how he processed this. Even now its hard, because when your child gets older, he will improve, but things change and there are other issues. We still deal with issues -- just had a talk on Friday night about our son. Just surround yourself with information and network to find those who can help you. If you and your hubby can attend an Autism support group, that would help too. Its important to connect to those who share your experiences. You will need a strong and knowledgeable support system. If you are a person of faith -- prayer -- (lots of it), worked for me. Personally, prayer has gotten us through the last 7 years -- was key for me. PM me if you'd like and I'll be happy to help if I can.... Sooo many folks helped me --glad to help someone else on their journey. Sending you a big from South Florida!!

 

[SueM in MN]

This is a very good resource for education rights and information about education for any parent of a child with special needs:
www.pacer.org

PACER (Parent Advocacy Coalition for Education Rights) is based in Minnesota, but it is a national resource. They have links to a lot of information and to advocacy links in each state.

 

[minkydog]

I can totally identify with the OPs feelings--been there & done that. Our Christian has a chromosome disorder which causes seizures,feeding problems, hearing loss, vision loss, severe MR, and autism. It took over 2yrs to properly diagnose him and we were given no hope for his future. Our lives changed drastically in the spring of 1995.

Christian(almost 11) is the happiest boy, oblivious of his many handicaps. He is nonverbal and wears diapers. He clumps around clumsily, flapping his hands, smiling, singing and lauging all day. He sails through life assuming the best about everyone. He never gets his feelings hurt because of someone's staring or rude comments. He isn't aware that he is different and he believes that everyone loves him(how could they not! ) Music and colors give him tremendous satisfaction. The simple pleasure of eating birthday cake fills him with happy murmurs for hours.

Do I ever wish things were different? of course. I don't dwell on it, but there are times that i look at Christian and wonder "what might have been." I cry sometimes, but not often anymore. My motto is "Whatever it takes." We have continued to push Christian beyond everything that was ever predicted. We never take "no" for an answer. My DH & I are united in our care for him, and our other two kids are just as ready to help. Living with a disabled child has enriched our lives in so many ways. We call it "life in the slow lane" and it's not a horrible life--it's just different.

You are still at an early stage where acceptance is very difficult. It takes time. Don't be too hard on yourself. After Christian was born I never thought we would have normalcy in our lives, but we do. We can do a lot of things that normal families do(with accomodations) like camping, going to WDW, hiking . We can go swimming and boating, we go out to dinner, we go to the movies and the playground. We have a dog. In every way we are a normal family.

 

[SueM in MN]

I just got the April issue of Exceptional Parent magazine and found that since April is autism awareness month, they had quite a few articles about autism in the magazine. You can look at the table of contents at www.eparent.com

Your local library or someone in your school district may subscribe to the magazine if you want to read any of the articles.

 

[gabbysmom04]

My son was born 5 months ago with a cleft lip and palate and a long long list of other medical prob. We travel 6 hours every Wed. for his care. His future will be filled with Dr. after Dr. And at times I just want to quit. I sometimes wonder if I will ever make it through each day. I read welcome to holland a few months ago and as much as I rather be in Italy believe me that Holland can be wonderful. I wish you all the best of luck. I know that you will make it through. At times I never thought that I would smile again, but we smile we laugh.

 

[playwright]

Hi DisneyDreams,
I just bookmarked the AutismSpeaks website. Thanks for the helpful info.

 

[playwright]

Sue,
Thank you for sharing that wonderful story about the dance class. Props to your thoughtful friend Nancy for starting the class. It shows the good one person can do and what happens when people work together. And big hugs to you too!

 

[KathyRN137]

You spend the first few weeks, months, (years?) in shock and grief...grieving for the loss of your "normal child".

Somehow, you manage to stumble through your days.

But you can't stop moving. You grope your way along. You discover that others are stumbling along the same road you are. Sometimes you reach out your hand and help another to her feet; sometimes its you who's getting picked up after you fall. And you are all praying the same silent prayer.

And then as the years pass, quite unexpectedly, you realize that you're walking...at times, even skipping along.

And what at first seemed so strange is now so very "normal".

Your child has grown so much; and he's been autistic for more years than he wasn't.

And it all seems so normal to you now.

This is your child and you love him more than your life.
The silent prayer has been answered.



Kathy

 

[KoalaJanie]

As a former special needs child who is now a mom of special needs child, I see both sides of the issues that you guys are facing and understand the feelings expressed in this thread.

My mother kicked my sorry butt when I was growing up and she made sure that I did what was needed to be done at the time meaning extensive speech, motor, and hearing therapy. Lost most of my hearing at 2 years old from a live virus measles vaccine and the rest at 10 years old.

My son--oldest triplet--has a rare congential spinal deformity and I've been researching and researching ways to minimize the effect of that deformity on his body and that meant extensive physical and occupational therapy. It was a battle for me to take him there. All the excuses that he's used to get out of it? Old news 'cause I did it too!

Each child is unique and they see the world differently and that doesn't make them stupid or odd. It just makes life interesting and helps us to be appreciative on things that we sometimes take for granted.

 

[luvsmickeymouse]

God Chooses Moms of Special Needs Children for a Purpose
Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
This year, nearly 100,000 women will become mothers of special needs children. Did you ever wonder how mothers of special needs children are chosen?

Somehow I visualize God hovering over the Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint....give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a special needs child." The angel is curious. "Why this one God? She's so happy."

"Exactly," says God. "Could I give a special needs child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it."

"I watched her today. She has that feeling of self that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make it live in her world, and that is not going to be easy."

"But, Lord, I don't think she even believes in You."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive." "Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people see My creations." "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone, I will be at her side every day of her life, because she is doing My work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles. "A mirror will suffice."

 

[ilovemickeymost]

EZ-You & your hubby can make it throught this, but you have to make sure you take time for your relationship. Even if you are living in different areas. Send love emails, ect. Also, remember to take time for yourself. Even if it is locking yourself in the bathroom, turning on the shower & sitting on the floor reading for 2o min. You need to recharge your batteries. Then you will be better able to deal w/ the strain & stress of your situation. We have a 12 yr old & newborn & our relationship has been strained as well. Until we relized that we needed to put our relationship 1st. You mentioned that you didn't have too many difficult choices before now, so please remember how fortunate you are. I'm so sorry you are going through such a rough time. You might not know what it is, but GOD has a plan for you.