Parenting Special Needs Children Blog
I created this blog for the purpose of sharing what is like to be a parent of special needs children. My husband and I are the proud parents of THREE special needs children: Felipe (10),
Who has been diagnosed with High Functioning Autism and ADHD, Jonah (3 1/2) with severe speech delay, anxiety and OCD traits and Seth (2) with severe speech delay.
Life everyday in our household is a challenge. We never know what the day will be like tomorrow so I hope I will be able to share a little about our lives here.
One of the things our middle son Jonah goes through are OCD episodes. Most of the time, it is very hard to remember ALL of them taking into consideration that we're also taking care of other two special needs children. I will list some of his obsessions:
1. Every time he uses the bathroom, he MUST brush his teeth afterwards.
2. He must have a cup of chocolate milk as soon as he gets up.
3. He must open the front door that leads to a porch every morning and must place a pillow behind the door.
4. During prayers, he must put "mute" in the remote control and turn it back on when we're done with prayers.
5. He will drink only from ONE cup (even though he has others).
6. Will get upset and cry if certain commercials are showing on TV.
7. Will not walk by the sidewalk in one of the streets in our community because he does not like the color of the wall.
8. When he returns home from any outing, he must check the back window of our apartment and try to see inside BEFORE entering our place.
9. Every time I hang his two favorite t-shirt pajamas* to dry in the porch, he waist patiently and when I am actually doing it, he shouts and kicks the porch door vigorously.
We bought a new set of pajamas for him (Lazy Town theme) and it was very difficult to get him to wear it because he refused, cry and shout. Anything "new" scares him. We were able to put it on him only because we googled the name of the show and showed him pictures of the show and he realized it is from the same t-shirt he was wearing. He wasn't too happy but he ended up sleeping with it.
Often times, it is so hard to remember each one of these obsessions because some of them will "disappear" but they will be quickly replaced by new ones.
It is truly sad that we are not able to get a diagnose for him to know exactly what is wrong so we could help him more. We try our best based on our circumstances and the country's lack of proper services for special needs children.
How is it possible that God can love an autistic child?
That was the question of my oldest son, who is 10 years old. As he gets older, he seems to be more aware of some of his challenges and is suffering of low self esteem and the eternal question of "why" he is "different" than other kids. It's very hard to try to explain it to him because often times, he refuses to listen to any sort of counsel even though he seeks it out.
My heart breaks for this child, seeing him every single day with literally no friends, no school and no one to truly understand how he feels.
He is so talented. He is learning how to play the piano with few basic lessons I remember from my own childhood, he is also good with computers but right now we're sharing one (the one I use for work) so he does not get to spend as much time as he needs. I am homeschooling because otherwise, he will be literally abused.
We live in a country where for years corporal punishment was legal and even though currently it is not legal, parents still encourage teachers to use it and teachers here are not afraid to do so. So here I am, homeschooling our 10 years old son with Autism, also teaching our 4 and 2 years old sons. On top of that, I have to cook, clean, do laundry and satisfy every little OCD (Obsessive Compulsive Disorder) of our middle son who does not eat certain foods, cannot see certain things, cannot touch certain things, cannot hear certain things...and the list goes on.
At the end of the day, I am literally exhausted. To say I am depressed is an understatement. I am drained. Physical and mentally.
We try very hard, every single day to provide and protect our boys. We wish they could access the right treatments and programs but unfortunately, we're living in a very tiny island where basic programs and specialists are rare to non-existent. And our boys suffer and as a mother you wish you could do better...and then you try to sleep, and you cannot because your mind is filled with all the things they need and that you are not able to provide. Tears come down your cheeks and you fall asleep in tears....EVERY single day. THAT'S our lives. That's the life of raising THREE special needs children in a banana republic.
The kids went to sleep a little late last night and they took very long to fall asleep. It rained this morning so they went to the porch and saw the rain falling. Simple things like that, that for a kid without special needs is common, for them many times is a big thing. They get excited, they jump and down and they just smile at seeing these small miracles of nature.
JB's computer is broken so he is using the laptop and I am sharing a computer with them, it's hard because I can hardly check email because Jonah wants to constantly use it and the thing is, it's the only thing that really keeps him quiet and calm. Not crayons, no papers, no toys but the computer. He is very good at it.
Last night, he had cereal and milk for dinner (his latest obsession) and a tiny drop of milk fall on his pants. He was not able to finish his food because of it, he was very upset and we had to change his pants almost immediately.
This morning, he seems very unsettled and our tiny Seth (2 year old) is also very unsettled, usually during the morning time and when they get up, we know how the day is going to be.
Felipe asked me a million questions in the morning period already and my head is spinning. It is very hard to get anything done when the demands for attention and help are constant. And I mean, constant 24/7 without interruptions.
When you're a parent of THREE special needs kids, your life is never the same and you kind of get lost in the background because you really don't have time for yourself anymore and as frustrated as it maybe, you know you have a responsibility to take care of and you MUST deal with it.
It's depressing most times and at the same time rewarding when you see your kids progressing, even with small, tiny steps. For us, having our almost 4 years old son say the word "NO" it's amazing. Having our 10 years old having table manners or our younger actually understanding an instruction is what gets us going.
It's a long life challenge that we hope, for the sake of these kids we can live until we're very old so we can take care of them. I don't know what could happen if we're not around to see about them. It's sad to think about.
I pray every day the Lord may help us by giving us a chance...just an opportunity, a semi-open door for us to move from here so these kids can access the ongoing medical treatment they need abroad, we also pray we can get our own home with a yard because they need space and living in a 2 bedroom apartment with no yard and THREE special needs children is extremely difficult.
I live in hope. That's all is left.
What a day. I am exhausted.
Jonah and Seth were very unsettled today again. They are not eating very well, particularly Jonah who wants corn flakes and milk for breakfast, lunch and dinner. Thank goodness, they ate Chinese food for dinner instead so at least a little change.
Felipe is doing very well with his piano lessons although I don't see his hyper verbal characteristics declining at all. He speaks from the time he opens his eyes and asks me what I am cooking for the day or whether he will go out to ride his bike and continues talking until the night. Non-stop. It's very hard to deal with this specially because he is not aware of it.
I washed clothes and as usual I had to put his two favorite p-j shirts to dry before was time for bed otherwise, he would scream and cry inconsolably and NOTHING, absolutely NOTHING would make him happy. Once his favorite shirt is on, he has a smile on his face and even laughs. Poor thing.
Seth is getting closer to be potty trained. He does not want diapers on anymore and he will pulled it off everytime he has a chance. I am literally following him up and down the house to ensure he doesn't.
I am feeling very depressed. I have been feeling like this for a very long time. Taking care of three special needs children take away absolutely all your energy, physical and mental to reach the point of exhaustion.
I used to be a fun, smiley, love outdoors kind of person before and now I hardly recognize myself and what I have become.
I am lost and there is no where I can find myself. Between the autism books, the flash cards, the daily tantrums and demands, the making a buck to survive, I just cannot find myself anywhere else.
Often times I wonder how others in my same situation would do, how would they act, how would they handle extreme daily stress, how they would possibly cope and I just shake my head because I cannot imagine it.
As I type this, I am hearing Seth and Jonah screaming as JB tries to fix the table.
Trying to satisfy a child with special needs is like trying to fill a glass with a hole at the bottom.
I hold Seth and type this with one finger.
My free 2 minutes time is over.
One of the reasons our kids are so demanding is because they don't have a yard where they can run and let that energy out. We live in a small apartment and when you have kids with special needs you need a larger space in order to accommodate their needs.
We are unable to provide that when the average house cost almost US$200,000 here (a very, very basic house). Cost of living has gone up by 400% in the last few years.
Jonah has been up since 5:00am, screaming to the top of his lungs and wanting to wake up everyone. Nothing seems to comfort him but to be in his daddy's lap watching Elmo. And of course, this means JB cannot get his work done.
We're all exhausted.