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Step parenting a special needs child full-time & making it work. Special needs isn't the end of the world.
How I got here
I met my husband and he was a single 54 year old PhD in the healthcare field. I felt like I hit pay dirt! He was fun to talk to and we had a lot of laughs, he had a beautiful home and we would cook -out and enjoy the beautiful area we lived in. In the beginning of a new relationship you don't really pause to think about the future and what it might look like in 10 years. I was 34 at the time and our age difference meant nothing to me; it's what I preferred. I have always felt a connection to people older than me and I could never be comfortable with a man my own age or younger. I guess I like the feeling of being forever youthful in the eyes of my partner. I'm sure that a psychiatrist would attribute my fondness for men older than myself to my tumultuous relationship with my own father, I have to admit they'd probably be correct.
After many months of dating and moving in together, I was hit with a bomb that rocked my world. An ex-girlfriend of his contacted him and was 5 to 6 months pregnant with his child. He explained that he had ended the relationship based on his discovery that this woman had a prescription pain pill addiction and who knows what else; he stopped taking her calls and that was that. Until she showed back up with child. She was still using pills and had concealed her pregnancy to keep getting prescriptions. Eventually when she was 29 weeks along they decided the baby would be safer on the outside in neonatal intensive care than in her body any longer.
His name is Cameron and he was born around 3.5 lbs and was hospitalized for close to 10 weeks and on a feeding tube. They wanted to be sure he was going to be okay before he was finally ready to be released and was strong enough to thrive on his own (boy did I have no clue how true the thriving "on his own" would become.
I will spare you the dramatics that ensued for the next 9 months, but when Cameron should have been the center of his mother's attention and secure and safe in her arms the center of her universe, his mother died of a drug overdose and he was left in a crib alone until her body was found. She never got to see her son turn 1.
I had a decision to make
I was home alone during the day with this baby, trying to nurture it and give it the love it needed but I was boiling inside with anger. How could he be so stupid to ruin our perfect future I had planned for us? How could he knock up someone so disgraceful? I was also torn because I have 2 older children from a previous marriage, it just seemed like to much for everyone. Luckily my older girls were with their father.
I had some serious thinking to do, could I really care for this child? Could I handle my life being taken over by someone else's baby? Could I stop myself from being jealous of the time I was losing to this unplanned unwanted obligation? As I was contemplating it all, I found out I was expecting, and the rest is history. We got married, I did my best to be a good replacement mother and I worked through my hatred for his biological mother, it wasn't easy but at that time I had no idea what she had actually done to her child. We were getting ready to have our worlds rocked with news nobody ever wants to hear.
And here comes the bomb
After I had our son Lyric the two boys were instant best friends. They are partners in crime, kind to each other and a tons of fun rather than any plastic toy and watching them grow together made me happy. As a couple years went by I started to notice things with Cameron were just not normal. He wasn't meeting his milestones, he was seriously smaller than kids his age; and his little brother was passing him by.
Cam didn't walk until he was 17 months old, and he was tiny; he still is tiny. At 8 years old he is only 43 inches tall and weighs about 45 lbs. Total lightweight, but cute as a button.
I kept telling my husband that something was wrong with Cameron but he was resistant to really believing it and thought that I was over obsessing and nit picking. I think he knew in his heart his son was not where he should be but the guilt he felt was hard enough to handle, he didn't have it in him to deal with more destruction thanks to the not so dearly departed.
I took Cameron on my own to a pediatric neurologist and got what would be the first of many diagnosis. He has FAS also known as Fetal Alcohol Syndrome, Severe adhd, and he was in the 3% for height, weight and head size. This particular MD thought he might have Microcephaly, which later on we found out was actually Static Encephalopathy also know as brain damage from and unknown origin, most likely trauma or exposure while in utero.
We have been to many doctors, had many tests done and today as it stands we have a child who has:
FAS aka fetal alcohol syndrome, brought on by acute toxicity from prescription drugs. I will explain later on in this article how FAS can occur with no exposure to alcohol.
Mild OCD, aka obsessive compulsive disorder
Static Encephalopathy aka brain damage
Developmental Dyspraxia aka clumsy child syndrome (I hate that term)
I have stopped accepting any new diagnosis or taking him in for continual testing so they can add additional labels onto him. It doesn't do anyone any good and it just becomes one more thing he feels inferior about.
He goes to mainstream school, although he was held back in Kindergarten, he is now going into 2nd grade. He spends most of his time in special ed, and seems to be consistently 2 to 3 yrs behind. If he wasn't so tiny it would actually be hard to notice that he had anything going on with him until you actually sat down and started talking to him. Thankfully he is able to live like a regular rambunctious 8 year old.
Cameron on his 8th birthday
Do you have a special needs child?
Go with your gut
At first when I heard all of these big words and diagnosis, I did whatever the doctors told me to do. I had him on Concerta, Rittalin, Risperdal all 3 medications 2x a day.
Yes it helped with his hyperactivity but it turned him into a zombie. He lost his personality, he started to slip backwards in his school work. I just felt like every bit of ground we had made we just slid back twice as far. The doctors aren't trying to trick you but they do have pharmaceutical companies to satisfy but what they tell you or better yet prescribe your child is an option, it's not mandatory just because you have the prescription in your hand.
I tried many things, I would skip a dose and see how he reacted, then I would cut him back and take him off the smallest does which seemed to make a slight improvement. But he still just wasn't himself. I could see that he was struggling to answer questions, he had a hard time communicating with any type of real clarity and yet I just knew that it wasn't his diagnosis' it was the medication. The doctors had him in what I'd call a chemical straight jacket.
I'm not asserting in anyway shape or form that you shouldn't follow your doctors advice. I'm merely telling you what I went through with my child.
Cameron medicated was like dealing with someone who had a serious brain injury. He spoke so slowly that he almost never finished a statement because nobody was patient enough to let him finish without just completing the sentence for him.
I now have him on 1.75 ml of Risperdal once a day and he is a thriving, happy, communicative, outgoing kid. Yes he has his issues and he always will struggle in areas that other people don't even recognize as a challenge but at least we are headed in the right direction. Had I not listened to my own head, he would not be half the boy he is today. I think a lot of parents use the medication they give children to relieve themselves of the hassle, not that they aren't good parents but it is much easier to let them be numbed by drugs than put up with the daily struggles of everything being a chore, especially when your younger kids have surpassed your child with S.N.'s (special needs) and you have to take the extra time to help him with things that are holding you up from getting where you need to be and become tiresome and frustrating, like tying shoes and getting ready for school.
The three trouble makers
Me and Cameron
Don't read to much into the future
As soon as I found out Cameron had FAS I started goggling "what to expect from kids with FAS".
The results I got back were terrifying to say the least. One website http://www.come-over.to/FAS/faschar.htm which is just one of many tells people that:
"Adults with FAS have difficulty maintaining successful independence. They have trouble staying in school, keeping jobs, or sustaining healthy relationships. They require long-term support and supervision".
On another website I read that kids with FAS have a higher rate of molesting their siblings. I flew off the handle and told my husband I couldn't live with that fear and if anything ever happened I would never forgive him, I got myself in a whole uproar. This was early on before Cameron's personality really emerged.
None of those things have come true and as a matter of fact, Cameron is very kind he would NEVER harm his siblings, he listens, he is independent in some areas, every year gets better.
I see him getting a license and having a girlfriend and living a normal life.
But had he been raised by people who believed he was this flawed, subhuman, brain damaged child with no hope for a future he might be very different. I don't tell Cameron he is different than everyone else, I just treat him like the other kids and expect him to keep up and guess what he does!
He is actually in many ways an example of how powerful positive sibling relationships (even between half siblings) can be because Cameron always strives and tries harder to keep up with his little brother.
The bottom line is, had I believed he was doomed; and that he was going to accomplish very little and never grow past the mentality of a small child. I would have robbed him of living a normal life. People are only as weak or small or stupid as you tell them they are.
If you have a S.N.'s child don't fret over what you read, try to avoid all the worse case scenarios because you can avoid all of that if you make up your mind to be positive.
Some tips that could help you make life easier
- Stick to a routine, the best you can. If your not much for routine at least keep your S.N's child on one. They will rely on it and it will help them be independent. It throws off their mojo I guess you could say when you switch stuff up on them.
- Watch what you feed your children, all those dyes and artificial flavors are toxic and make symptoms worse. It really does matter if food is organic or not.
- Make things as simple as possible, instead of messing with laces like I mentioned above, buy shoes with Velcro. Make everyone's lives as easy as possible.
- Make them do chores, Cameron loves to help out, he will do anything to be of use.
- Don't talk about the child unless they can't hear you. Children like Cameron take everything very literal. You could crush them just by saying something innocent that they don't even really understand the meaning of.
- DO NOT COMPARE KIDS, obviously your S.N's child is not going to be the same as your other children. Try not to compare the kids, it just sets you up for trouble. It's true when they say that "Comparison is the thief of joy".
- Affirmations- remind your S.N.'s child daily that they are smart, and strong and beautiful.
- Don't sweat the small stuff, don't let your S.N's child's awkwardness or odd behavior embarrass you and make you feel like you are being judged, most people aren't even paying attention!
Cameron and Lyric, video of brothers who are best friends with music
© 2014 Karen Ranoni